Defending Joyhttps://defendingjoy.com
Healthy Living, Special Needs, and AllergiesFri, 05 Apr 2019 12:23:51 +0000en-US
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3232134379876How our Pet Guinea Pig Helped our Daughter Understand her Allergieshttps://defendingjoy.com/how-our-pet-guinea-pig-helped-our-daughter-understand-her-allergies/
https://defendingjoy.com/how-our-pet-guinea-pig-helped-our-daughter-understand-her-allergies/#commentsMon, 26 Nov 2018 16:58:40 +0000https://defendingjoy.com/?p=441Processing the feelings associated with having food allergies can be difficult for a young child. So I want to share something that has been a big emotional support for our daughter. Back when our daughter was 3, she really struggled with having different foods than my husband and I. Our daughter’s safe foods are very ... Read more

]]>Processing the feelings associated with having food allergies can be difficult for a young child. So I want to share something that has been a big emotional support for our daughter. Back when our daughter was 3, she really struggled with having different foods than my husband and I. Our daughter’s safe foods are very hard to source, and it’s not possible to get enough to feed our whole family her foods. Alhrough we do sometimes share a treat like freeze dried fruit. We spent a lot of time researching animals and diets, to make sure we could find a pet to feed without making our daughter sick. Fortunately despite her many food and environmental allergies, she doesn’t have any animal allergies.

Eventually we got a Guinea Pig, and it ate our daughter’s safe fruits and vegetables, plus hay, and pellets free of all her allergens. We had conversations many times a day about what was safe and not safe for a Guinea Pig to eat. We talked about keeping the Guinea Pig healthy, and making its tummy feel happy. It has been really helpful for our daughter to realize she can share some foods with the Guinea Pig, but others safe foods for our daughter, like meat and nuts, would hurt it. And the Guinea Pig eats grass and hay, but that is bad for people to eat.We talked about the foods our daughter and the Guinea Pig could both eat, and encouraged our daughter to feed her those foods often. Having to respect the food restrictions for a pet has helped our daughter with the idea that we are helping her by not sharing foods with our daughter that make her feel bad. Within a month of getting our Guinea Pig, our daughter stopped asking to eat our food. Getting a pet was the most helpful thing we have ever done for helping deal with the emotional aspect of FPIES.

Even though we settled on a Guinea Pig, this same lesson could work with any pet. Each species has its own dietary requirements. Having a daily, ongoing conversation about dietary needs, cross contamination, and keeping everyone’s body healthy really helps the lessons sink in. Do any of you have a pet? Comment below what kind of pet you have, and if it’s been helpful to your family.

]]>https://defendingjoy.com/how-our-pet-guinea-pig-helped-our-daughter-understand-her-allergies/feed/1441The FPIES Handbookhttps://defendingjoy.com/the-fpies-handbook/
https://defendingjoy.com/the-fpies-handbook/#commentsWed, 13 Jun 2018 18:03:20 +0000https://defendingjoy.com/?p=379The FPIES Handbook is now available for purchase! It is my hope that this book about Food Protein-Induced Enterocolitis Syndrome will help many families to improve the quality of life for their child, and thus their whole family. Food allergies of the digestive tract are on the rise; one of the most serious among them ... Read more

]]>The FPIES Handbook is now available for purchase! It is my hope that this book about Food Protein-Induced Enterocolitis Syndrome will help many families to improve the quality of life for their child, and thus their whole family.

Food allergies of the digestive tract are on the rise; one of the most serious among them is FPIES. What happens when a family doctor, a registered dietitian, and an FPIES support group leader – all mothers of children with FPIES – work together? You get a must-have resource for FPIES families. This book is packed with anecdotal experiences, encouragement, and scientific research. It presents FPIES in a way that it has never been presented before in hopes that it will leave you feeling encouraged, educated, and ready to manage your child’s condition. For the parents experiencing FPIES with their children, knowledge can be power; may you never again feel as scared or as alone!

Thanks to everyone who helped make this book a reality. February 2018 I started the outline, and the eBook as finished and on Amazon by June! It’s been an incredible few months and I never could have done it alone. Special thanks to Dr. Eva Cesnek for her help with writing and medical accuracy. For a listing of the dozens of other individuals who had a role in producing the FPIES Handbook, please see them Acknowledgements.

Below is the table of contents so you can see how comprehensive this book is. I’m really proud of the team that came together to produce this, and I hope many families are able to benefit from it. If you are in need of this book, and cannot afford it, please send me an email.

TABLE OF CONTENTS

Purpose of this Book and Disclaimer

Foreword by Heather Martin, RD, LD

PART ONE: INTRODUCTION

Welcome! Your child has just been diagnosed with FPIES (food protein-induced enterocolitis syndrome)! What does that mean? What is FPIES? What do I need to know about food protein? These questions will be addressed in the following chapters in Part One: Introduction.

Introduction: What is FPIES?

Introduction: FPIES-It Is All About The Food Protein

PART TWO: DIAGNOSIS

Wait! Are you sure it is FPIES? If you are like most parents whose children were just diagnosed with FPIES, you may still be in shock over the diagnosis. The diagnosis was probably delayed and occurred only after your child had multiple FPIES reactions. What does an FPIES reaction look like? What is the difference between an acute FPIES reaction and a chronic FPIES reaction? Why do so many medical professionals miss this diagnosis? What are some of the medical conditions that doctors mistake for FPIES? These questions will be addressed in the following chapters in Part Two: Diagnosis.

PART THREE: MEDICAL VISITS
After you have a diagnosis, what happens next? Who will be on your child’s medical team for FPIES? What questions should you ask them? Will they want to do any testing? Will they put your child on any medications? These questions will be addressed in the following chapters in Part Three: Medical Visits.

PART FOUR: WHICH FOODS
Soon after you start visiting with your child’s medical team, you may hear the following: avoiding food protein triggers, preventing additional acute FPIES reactions, finding nutritious foods, creating a nutritionally complete diet, and quickly expanding your child’s tastes and textures. These concerns will be addressed in the following chapters in Part Four: Which Foods.

Which Foods: The Importance of Advancing a Child’s Diet at an Early Age

PART FIVE: FOOD TRIALS
Your medical team may expect you to conduct food trials at home. What are they? How are they done? How do you monitor for a reaction? What do different symptoms mean? These questions will be addressed in the following chapters in Part Five: Food Trials.

Food Trials: How to Do a Food Trial

o Step-by-step instructions
o FPIES symptoms food chart
o Factors to consider when choosing a new food
o When to start a food trial
o How to present new food to a child
o How much food to trial
o Baking or cooking a new food
o How long to trial a food before considering it safe
o Different food trial methods
o Faster ways to trial food

o Cross-contamination of items by food allergenFood Trials: Medications and Vaccinations that have Food Components
o Medications
o Vaccines that have food componentsFood Trials: What to do During an Acute FPIES Reaction
o FPIES-related vomiting
o FPIES-related dehydration
o FPIES-related diarrhea
o Homework: Medical Letter
o Treatment of Anaphylaxis (IgE-mediated allergic food reactions)Food Trials: Monitoring for FPIES Resolution
o Testing to see if FPIES has been outgrown
o Ages for outgrowing FPIESPART SIX: LIFE IMPACTS
As you live the life of an FPIES parent, you may notice just how much FPIES affects your day to-day life. Your finances may be affected. You may experience psychological stress. You may want to have another biological child but be worried that your next child will also have FPIES. Your child may develop feeding difficulties. These concerns will be addressed in the following chapters in Part Six: Life Impacts.Life Impacts: Psychological Stress of FPIES
o Postpartum depression
o Stress reaction
o Different stages of grief
o Analogy of grief
o Repercussions of having a baby with colic
o Maslow’s hierarchy of needs
o Feeling alone as a parent
o Feeling like the medical profession was clueless
o Feeling like FPIES was just really hard
o Bullying in children with FPIES
o Finding “you time”
o Making new friends

o Educating teachers and school staff about FPIES
o Finding a strategy to communicate
o Creating an emergency action plan
o Being specific about FPIES symptoms that can mimic illness
o Asking questions about meals and snacks
o Discussing ways to avoid unnecessary exposure to trigger foods
o Discussing ways to avoid exposure during arts and crafts
o Helping our children to have a good experience
o Documenting documents
o Never feeling alone

Life Impacts: Preventing FPIES in a Future Child

o Prenatal environment
o Early postnatal environment

PART SEVEN: CLOSING REMARKS
Finally, along the way on your FPIES journey, you will meet other parents whose children also have FPIES. Interspersed throughout this book, you will also read their stories. Then at the end of this book, you will get to the following chapter in Part Seven: Closing Remarks.

]]>https://defendingjoy.com/the-fpies-handbook/feed/6379Oral Rehydration Solutionhttps://defendingjoy.com/oral-rehydration-solution/
https://defendingjoy.com/oral-rehydration-solution/#respondWed, 04 Apr 2018 16:27:18 +0000https://defendingjoy.com/?p=321Oral Rehydration Solution (ORS) is used to maintain proper fluid and electrolyte levels in the body. there are numerous commercially available preparations. But they often contain processed sugars, dyes, artificial sweeteners and preservatives. So if you want something better, for health or allergy reasons, I have made a few recipes for you. The first two ... Read more

]]>Oral Rehydration Solution (ORS) is used to maintain proper fluid and electrolyte levels in the body. there are numerous commercially available preparations. But they often contain processed sugars, dyes, artificial sweeteners and preservatives. So if you want something better, for health or allergy reasons, I have made a few recipes for you. The first two recipes are balanced, containing the same carbohydrate, sodium, and potassium levels as commercially available toddler rehydration beverages. Additionally they provide magnesium and calcium which other options do not include. The third option provides less potassium. But its still provides some, along with magnesium and calcium. Each link includes both the recipe and a nutrient analysis.

If you want a simpler option, you can use this sugar and salt recipe. However it is lacking potassium, magnesium, and calcium. It also includes a few additional options: http://rehydrate.org/solutions/homemade-ors.pdf

]]>https://defendingjoy.com/oral-rehydration-solution/feed/0321My Child Taught Me to Be an Advocatehttps://defendingjoy.com/my-child-taught-me-to-be-an-advocate/
https://defendingjoy.com/my-child-taught-me-to-be-an-advocate/#commentsTue, 20 Mar 2018 11:01:52 +0000https://defendingjoy.com/?p=323Bonnie Landau from Special Mom Advocate is here with a guest post on how she has learned an important mindset shift because of her son. When we’re pregnant we have certain expectations of parenting that seem so ideal and wonderful. The walks with the stroller, teaching our kids to games, watching them grow, learn and ... Read more

]]>Bonnie Landau from Special Mom Advocate is here with a guest post on how she has learned an important mindset shift because of her son.

When we’re pregnant we have certain expectations of parenting that seem so ideal and wonderful. The walks with the stroller, teaching our kids to games, watching them grow, learn and flourish. It’s quite a shock to the whole mental system when you realize that your child is not developing normally; that something is off, and nobody can really tell you why or how to fix it.

That was my situation. Our son did develop normally, but at 18 months he began to regress. There were no answers, except murmurs of possible autism or something they couldn’t define. He started speech therapy and occupational therapy, and I anxiously hoped that would fix whatever this ‘problem’ was.

What I did not realize at that time, was this little precious boy was going to force me to change radically in order to be the best mom I could for him. I am talking a serious 180-degree shift from the quiet, perfectionistic designer I was into an assertive, problem-solving advocate. My son has been my greatest teacher, and it is because of him I help other parents find answers for their children with challenges.

For over 25 years I’ve been a web/graphic designer. I loved my work, always relishing a new design or technical challenge. But when my son was 6 we were told he would need group home care as an adult, and nobody would help me find solutions to change this future. So I had to put my problem solving brain to work on finding a way out for him.

I began researching and talking to people and filling my brain with new facts about neuroplasticity, processing and brain therapies. I was quick to realize I had a knack for this thing. When my first hunch about auditory processing disorder proved to be true, I knew I was on the right path to helping my son get better.

You see, while the neuropsychologist told me he’d never be normal (whatever that is), my intuition told me that was not his destiny. Some say I should have accepted him the way he was, but my heart said he was trapped in a brain that wasn’t working right. He could improve if I could only find the right solutions. That instinct led me on this learning journey that has now turned into a second career for me.

I am a special education advocate, but more than that, I’m a special needs parenting coach. I can help you find the underlying root cause of neurological problems, and I can point you to specialists who can improve or even recover those problems. I will work with you to teach parenting techniques to manage difficult behaviors, and I will provide tools you can use on a daily basis to minimize these behaviors. Together we can find a way through so your child can flourish despite the challenges, and you can feel less anxious about his future.

My older son is the best teacher I ever had. My love for him forced me to grow and respond in ways I never knew I was capable. I learned that I can remember volumes of factual information, and then puzzle it all together when faced with a group of symptoms that do not seem to relate. Because of him, I am able to be of service to parents who desperately need answers, and I feel fulfilled in this journey.

People rarely talk about the emotional side of the journey, and what you can do to avoid the stress pitfalls that are certain to come up. That is why 1/3 of my book is dedicated to these topics, so you can get your thoughts into the right mindset, and you will regularly care for you. You need to be in the best shape possible to care for others, and I emphasize this over and over in my book.

I realize a book can only help so much, so that is why I also started my business, Special Mom Advocate, which focuses on finding and advocating for the best possible services and solutions for your child. In my work I help parents talk to the schools, negotiate for services, or make hard choices when the fight becomes overwhelming. Outside of schools we look for underlying causes of difficulties and seek out solutions that help the child improve. Throughout the process my experience with my son allows me to be right beside you, with great empathy, and with knowledge that gets results.

My work is not always fun. Sometimes the schools put up a good fight. Sometimes a solution does not help. Sometimes the parents are so exhausted they do not have the energy to keep going. Then there are days when we get what we ask for, the right solution is implemented, and the child finally reaches a new milestone.

The best part of my work is when a parent reports back that the therapy I suggested made a massive difference. Like the mom whose child was having extreme difficulty reading, and based on his symptoms I recommended a behavioral optometrist for possible vision therapy. Six months later she called very excited to let me know he had been doing the vision therapy, and he had caught up to reading at grade level now that his eyes were working right. It’s very gratifying to have helped guide her to a choice that made such a massive difference.

For me, I am most grateful to my son whose challenges forced me to discover a new part of who I am. While I found all the therapies and strategies, he’s the one who has had to live them. He’s been a trooper through the whole thing, learning in the process what it means to try hard, even when the trying feelings impossible. He has gone from a child who was destined for group home care to a young man who is an honor student and destined to go to college to learn engineering.

It is because of him I do this work. Because I know there are many more like him who have parents who need guidance and support. Once we find the right answers, then there is no telling where these kids will go!

]]>https://defendingjoy.com/my-child-taught-me-to-be-an-advocate/feed/6323FPIES and Quinoa Queen for Rare Disease Dayhttps://defendingjoy.com/fpies-quinoa-queen-rare-disease-day/
https://defendingjoy.com/fpies-quinoa-queen-rare-disease-day/#respondSat, 24 Feb 2018 18:57:07 +0000https://defendingjoy.com/?p=305There are about 7,000 rare diseases which are recognized on February 28 for Rare Disease Day. Food Protein-Induced Enterocolitis Syndrome (FPIES) is the rare disease that affects our family. It primarily affects children young children, and is a poorly understood food allergy condition. It’s a non-IgE, cell mediated allergy that causes two categories of symptoms: ... Read more

]]>There are about 7,000 rare diseases which are recognized on February 28 for Rare Disease Day. Food Protein-Induced Enterocolitis Syndrome (FPIES) is the rare disease that affects our family. It primarily affects children young children, and is a poorly understood food allergy condition. It’s a non-IgE, cell mediated allergy that causes two categories of symptoms: acute and chronic. Acute reactions cause vomiting several hours after ingestion, which 20% of the time results in shock. In our case even a trace amount of cross contamination from causes vomit and shock starting exactly 4 hours after eating it. Fortunately Zofran is effective at preventing the shock, but without it the reaction can be life threatening. Chronic reactions are delayed by hours to days and cause a variety of symptoms which can vary from one individual to the next, and the definition is still debated. But we have seen the following in our daughter: abdominal pain, diarrhea, bleeding rash on the bottom, malabsorption, weight loss, developmental regression, hypoglycemia, and acidosis. These symptoms can be mild, or severe enough to require hospitalization for IV nutrition. It can be very challenging for children and their families to deal with. The lack of research and awareness about FPIES makes it even more difficult. Parents frequently seek help from multiple doctors and wait months or years before receiving the correct diagnosis for their child. Even after the correct diagnosis is given there are few resources available to help families navigate the struggles of FPIES. For a better understanding of how pervasive the effects of FPIES are, check out this explanation of what allergy friendly cooking is like or this description of the limited diet some moms have to put themselves on to make safe milk for their child.

To help support FPIES families on their difficult journey, Quinoa Queen is selling awareness bracelets. In honor of rare disease day they are donating $1 from each bracelet sold to the FPIES Foundation. This donation will help improve the lack of knowledge about FPIES. They are wonderful company that cares about their customers, and I have witnesses their great customer service. I am very thankful that quinoa queen has decided to donate to the FPIES Foundation. Quinoa Queen cereal is a favorite for many FPIES families because it just has a single, high quality ingredient, and careful consideration they provide for allergy needs. They even changed how they clean the manufacturing equipment just to make it allergy friendly. You can check out their product offerings on Amazon.

To help with the lack of resources for parents I am working on a book called FPIES 101 if you are interested in being notified when the book is available you can follow Defending Joy’s page on Facebook or sign up to get notifications of new post on Defending Joy’s blog.

]]>https://defendingjoy.com/fpies-quinoa-queen-rare-disease-day/feed/0305An Atypical Breakfasthttps://defendingjoy.com/an-atypical-breakfast/
https://defendingjoy.com/an-atypical-breakfast/#commentsSat, 17 Feb 2018 22:08:46 +0000https://defendingjoy.com/?p=295Before she was born, I never gave much thought to what my daughter would eat for breakfast. If I did think about it, I figured she would have a typical American breakfast. Cereal and milk, pancakes, bacon and eggs, etc. But instead food has been a struggle for her. It’s been a long hard road ... Read more

]]>Before she was born, I never gave much thought to what my daughter would eat for breakfast. If I did think about it, I figured she would have a typical American breakfast. Cereal and milk, pancakes, bacon and eggs, etc. But instead food has been a struggle for her. It’s been a long hard road to find things her body can tolerate because of her FPIES. But she has multiple other diagnoses also. Along the way we have found some supplements that ease one or more of her symptoms. Her doctors have also helped prescribe medications to help her. Today I’m thankful she has enough safe foods to make this breakfast possible, and greatful that we have found supplements and medications that improve her quality of life in many ways.

The Gastrocrom is a prescription mast cell stabilizer, it helps calm the mast cells in her GI tract so they are less sensitive to foods. It doesn’t prevent her most severe reactions, but it increases her ability to add new foods. Also having her GI tract be less reactive helps her weight gain follow her curve. The B vitamin drops seem to help her focus a bit. CBD oil decreases the intensity of her sensory seeking. Cod liver oil provides her Vitamin D, because she doesn’t tolerate the lanolin in most Vitamin D supplements. Sauerkraut juice provides probiotics, which helps address the abnormal gut microbiome in FPIES. Compounded Zantec (ranitidine) is used when we are off Gastrocrom, or starting it up while we wait for it to become effective. Salmon oil provides DHA and EPA for her brain. Prune and chia seeds help keep her regular. Gerber Soothe and Culturelle also help with her gut microbiome. Phosphatidylserine is an important lipid for the brain, it is available in combination with fish oil in the prescription medical food Vayarin, used for ADHD. The oatmeal bread is her current favorite breakfast food. A serving of organ meat each day, such as chicken heart provides a variety of vitamins and minerals. So that is how we arrived at this unusual looking breakfast. It brings me joy to see her eat a nutritious meal like this, such an improvement compared to when she was younger.

]]>https://defendingjoy.com/an-atypical-breakfast/feed/2295FPIES Food Survey: Version 2https://defendingjoy.com/fpies-food-survey-version-2/
https://defendingjoy.com/fpies-food-survey-version-2/#respondSun, 04 Feb 2018 18:29:15 +0000https://defendingjoy.com/?p=259The FPIES Food Survey has been a huge help to the FPIES community. Many years ago, an FPIES mom had the idea to create a Food Survey to help guide trials by risk ratio. Now another FPIES mom has created a new survey, because it’s not easy to go back and edit old responses as ... Read more

]]>The FPIES Food Survey has been a huge help to the FPIES community. Many years ago, an FPIES mom had the idea to create a Food Survey to help guide trials by risk ratio.

Now another FPIES mom has created a new survey, because it’s not easy to go back and edit old responses as kids grow and their triggers change. So her idea is to capture a new snapshot of data, and also collect some additional information, such as the age of the child at the time of the response. Click Here to take the new survey.

Here is the link to the new results. You can use the filters to sort the data in different ways. For example if your child reacts to rice, you can see only the responses from other children who don’t tolerate rice.

Finally, I have made a survey specifically for mammal milks. The results include FPIES and other types of allergies also. The goal is to look at the cross reaction rates of milk from different animals, or different types of processing.

]]>https://defendingjoy.com/fpies-food-survey-version-2/feed/02592018 Blogger Recognition Award 🥇https://defendingjoy.com/2018-blogger-recognition-award/
https://defendingjoy.com/2018-blogger-recognition-award/#respondThu, 01 Feb 2018 19:34:50 +0000https://defendingjoy.com/?p=261I was nominated by Modern Motherhood for the 2018 Blogger Recognition Award. She blogs about her life as a mom. I’m honored she selected my blog from the many choices she had. Now it’s my turn to pass the award on to 10 more blogs. 2018 Blogger Recognition Award Winners James’ Health Journey Blog from ... Read more

]]>I was nominated by Modern Motherhood for the 2018 Blogger Recognition Award. She blogs about her life as a mom. I’m honored she selected my blog from the many choices she had. Now it’s my turn to pass the award on to 10 more blogs.

2018 Blogger Recognition Award Winners

James’ Health Journey Blog from a fellow Autism Spectrum Disorder mom. Follow along as she fights to help her son flourish.

Rules

The rules vary depending on which source you use. So this is my interpretation of them:
1. Write a post and include a link back to this blog. You may include the award image with credit linked to Defending Joy, or make your own.
2. Pick 10 blogs to nominate. You can set your own criteria for selection, just make sure you have a way to contact the blog owner. (If you need help finding some new bloggers to pick from, join this Facebook group, or this one)
3. Link to each of the 10 blogs in your post.
4. Pass the rules on.
5. Let the blog owner who selected you when you publish your award post.

Why participate?

The biggest reason to participate in the 2018 Blogger Recognition Award is Search Engine Optimization (SEO). Search engines identify new content online by following from one link to another, so you need links to your site. The second reason is exposure. Each blog that participates will be sharing your blog with their audience, helping you find new readers. Links to blogs with at least a little similarity to your own will be more helpful for exposure and traffic. If you want more tips about how to use this award to grow your blog, send me a message on Facebook . Congratulations, and good luck on your blogging.

]]>https://defendingjoy.com/2018-blogger-recognition-award/feed/0261Mammal Milk Cross Reactivity and Tolerancehttps://defendingjoy.com/mammal-milk-cross-reactivity-and-tolerance/
https://defendingjoy.com/mammal-milk-cross-reactivity-and-tolerance/#respondSun, 28 Jan 2018 03:23:19 +0000https://defendingjoy.com/?p=257It has been widely discussed that cow and goat milks have a high rate of cross reaction. But I’m curious about other types of mammal milk also. So I have created a form to collect some data. Make sure to Like 👍 my page on Facebook if you want to know the results of this. ... Read more

]]>It has been widely discussed that cow and goat milks have a high rate of cross reaction. But I’m curious about other types of mammal milk also. So I have created a form to collect some data. Make sure to Like my page on Facebook if you want to know the results of this.

]]>https://defendingjoy.com/mammal-milk-cross-reactivity-and-tolerance/feed/0257Guest Post: Struggling with the US Health Insurance Systemhttps://defendingjoy.com/health-insurance-system/
https://defendingjoy.com/health-insurance-system/#respondWed, 24 Jan 2018 16:14:34 +0000https://defendingjoy.com/?p=242Heather Martin from Mom of No Rank is here today with a guest post. She had originally written this post on struggling with the US health insurance system for Facebook, explaining the excessive difficulties of getting her child the medical care they need. I asked she if I could share it here as well, because ... Read more

]]>Heather Martin from Mom of No Rank is here today with a guest post. She had originally written this post on struggling with the US health insurance system for Facebook, explaining the excessive difficulties of getting her child the medical care they need. I asked she if I could share it here as well, because it shows the struggle that parents of medically complex children, or adults with their own chronic health problems deal with constantly. Dealing with insurance, billing, and endless paperwork and phone calls is one reason many special needs parents have had to quit their job. As long and complicated as this story is, she has actually simplified it for us. So keep that in mind as you read it.

I have a story for you that will illustrate a national problem we are all having. It’s long, but the fact that it is long is the actual issue. Bear with me.

We switched insurance last fall, to a large, national company, and have a child with a monthly order for nutritional and medical supplies from something called a DME supplier (durable medical equipment). I call the month before the change is official to ask about our benefits. They can’t tell me the percent that would be covered until the first day the insurance is active. Sorry! Annoying for budgeting purposes, but…fine. I ask whether our old DME provider is in-network and am told they are, which is great, because it takes *hours* on the phone to get a new order set up properly. This is not an exaggeration, as you’ll soon see.

A month later, we get a letter from insurance saying our DME is out of network. When I call back, the rep finds the name of the company — in network. I read her the letter, but she can’t understand why it was sent, and she gives me the provider ID number they have listed. I call the DME provider to check, and they have a different number. The one insurance was looking at was only for their home health division, not the DME. Ooopsie! Call insurance back, and they give me their list of in-network DMEs, saying all I need is a primary care referral. But a specialist manages this order, I say. Oh, that’s fine, as long as we have a primary care referral to that specialist. I verify that they have the current referral on file. Yes!

Now to the list of DMEs…dozens of them. But, they are totally randomly organized. There’s no way to filter them except by location, and you don’t want to do that, because this is mail order. I don’t need them to be close — I need them to ship. The list includes companies that only sell diabetic supplies, or only ostomy supplies, and a random Walgreen’s in Witchita, KS. Does “American Care Equipment” sound like they carry nutritional supplies? “J and R Medical”? Your guess is as good as mine! I do not want to use the big name I recognize, because I recognize it from my own patients complaining about improper billing. So, I start calling to find one that carries all the supplies we need. After several calls, I find one, and have the doctor send the complicated order, a letter of medical necessity, and a copy of our state’s senate bill mandating coverage for the special formula my child requires for his medical condition — I’ve learned from experience that this cuts down on improper denials of coverage. (We are lucky to have this kind of law, which many states do not, because this formula that my child needs to survive is $40 a can retail, for a total of about $700 per month.)

Then the DME calls to let me know they got the order, but although they carry the formula and all the tube feeding supplies, they do *not* carry the pump we need to run the feeding. Oopsie! They forgot to mention it. I find another DME that has all the supplies. Great! Do they carry pumps? Nope! I call the insurance to see whether they can give me any information about who on this long long list might carry pumps. They have no idea. Okay, can you tell me what percentage coverage we will have for DME supplies now that you’re officially my insurer? No, for that they would need the specific ordering codes from the company. I have never been told this for any other medical need from any other insurer. Usually, they say 80% coverage for in-network hospitalizations, 20% for out, 50% for DME supplies, whatever. This big company cannot tell me what percent they will pay unless I give them ordering codes…I just have to order it and find out! Good times!

Okay, back to the list, and after several more calls, I find one that carries all the supplies — including pumps! The specialist’s office sends them all the paperwork. The local DME office calls to say they got the order, but…they do not fill pediatric orders! You carry this pediatric formula, but you do not fill pediatric orders? That’s right. Ooopsie, forgot to mention. Do any of their other, national offices? Yes! But they can only ship to me from the local office, company policy. Sorry!

I throw in the towel, and call the big DME that I do not like. They are under relatively new management — maybe things have changed. They have everything! They provide pumps! They fill pediatric orders! The absolute angel of a nurse at the specialist’s office sends a THIRD ORDER with all attendant paperwork to the big DME. They fill the order perfectly. Then the next month’s order, perfectly. Hmmm, no bill yet. They tell me they haven’t heard from our insurance. Third order. No bill. The DME tells me what they think we will owe, which doesn’t sound right…too little. After 4 months, we get our explanation of benefits for the first month’s order from the insurer, with a very large number for “what you may owe provider”. The provider does not think we owe this. I call insurance. Oh, that’s for your out-of-network deductible!

I take a deep breath.

I got. The name. And contact info. For this company. From the in-network list. That you provided me.
Four. Months. Ago.

Hold please!

The rep comes back and says, Oh! It’s because you don’t have a referral from primary care! So you’ll be charged out-of-network.

This is not my first rodeo. I have notes. So I say, well, your rep by this name told me on this date that it would be covered as long as the ordering specialist has a primary care referral on file. The referral, which this rep verified you have, is active through these dates. So.

Hold please!

After 18 minutes, the rep comes back on and says I’m right! Our plan *does* cover this provider in network, and they do *not* require primary care orders as long as the specialist is properly referred. They will fix this and send me a new explanation of benefits within 24 hours. Great! So, now that they have the ordering codes in front of them, can they tell me what percent of this bill I will owe for in-network? Nope! Our plan says the rates are decided in individual agreements with each DME. There is, unbelievably, no way for this rep to look up the DME on a database somewhere and find out what the agreed-upon percentage is. This means it’s possible I would pay less with a different DME, if I shopped around, and took advantage of that market competition that everyone is so hot on. But, most DMEs will not call your insurance and calculate what you owe *until you actually place an order through your physician*, so you *cannot* compare unless your insurer will give you the percentages for the different companies on that long, long list. As it is, I will have to call the DME to find out what their agreement says I owe…

AFTER they get and process the amended report from our insurance. Which will be after they have sent our fifth order. Each order is about $1300. I have no idea what percent we will owe.

I made it through this call without losing my cool. I’m fine. We’re all fine…We will have plenty of money to pay the bill regardless of what it is. Our child is growing well. This is relatively good, employer-subsidized insurance that we’re in no danger of losing. I am in good health and sound mind, I’m a health care provider myself, English is my native language, and I only work part-time, so not only do I easily understand the terminology involved and my rights, I can spend hours on the phone to get this figured out without missing work. This is not true for many people.

There was one month right at the beginning, when I was trying to get the first order with the new DME, and we came within 2 or 3 days of missing the chance to order for that month. If you miss a month’s order, most insurance will not cover it — they only cover one order per month, and if you order a few days late and go into the next month for any reason, even if it is the insurer’s fault for not processing your quarterly re-approval for example, even though your specialist and DME provided the application for re-approval a month early, they will not cover the backorder. This formula is my child’s main source of nutrition, and remember, it is really expensive. Now, if this had happened to us, I know how to order supplies out of pocket. I’ve done that before, because as one example, insurance will only cover 4 extension tubes and 30 pump bags per month, even if there are 5 weeks or more than 30 days in a month and it is unsafe to use equipment for longer than recommended, so I have ordered extra ones off of EBay and Amazon to have backups when there is a hole in something, or we run out before the month is up. It would have cost a lot to order for a whole month, and I would have had to have it overnighted, but our child would not have missed a day of food, because we are incredibly lucky. This is not true for many people.

I think this system is unacceptable. Do you? It would take a lot of effort to change it. The thing is a seething, bloviating behemoth of a system, it makes a lot of campaign donations, and it has a big ego. It doesn’t want to change. If you would like it to change, it’s going to take communicating that to your government reps and candidates at the state and local level. Loudly. A lot.

People not doing this has resulted in many among our fellow citizens worrying endlessly, suffering needlessly, and dying early. This is not an exaggeration. They don’t have insurance. Or, they can’t afford their order after insurance denies it. Or, they can’t afford their order after insurance *approves* it, because of the markup required to pay everyone at the pharmaceutical company, the insurance company, and the team at the doctor’s office whose only job it is to navigate this stuff. Or, they have good coverage, but they don’t get their order on time after insurance drags their feet. Although other ways of providing care have drawbacks, this *does not happen* in other developed countries, and it doesn’t have to happen here — People calling their reps is what thankfully, blessedly got our state law passed, the one that requires our insurer to cover a medically necessary formula for our child –the one that would cost us $700 a month otherwise, plus another $600-700 in supplies. (Shout out to Leticia Van de Putte for sponsoring it.)

How much does it cost us after insurance? Well, I’ll let you know, someday…when I finally get a bill.

Check out her blog to learn how she stays calm through all of this, and follow her on Twitter at Mom of No Rank.